A May 15, 2014 New York Times article, Alzheimer’s, a Neglected Epidemic by Ginia Bellafante, provides a keen look at a fatal disease that many still assume is one that only other people get. Maybe my coworker a few cubicles away from me or the neighbors down the street will have to deal with some sort of dementia, but not our household – right? You wish. Alzheimer’s is a world-wide epidemic and it’s knocking on your front door.

In 2010, Alzheimer’s was the underlying cause in 500,000 deaths in the United States.

Let’s look at another epidemic with horrific fatality totals. Remember the AIDS crisis? As of the year 2010, in thirty years’ time, AIDS was responsible for 636,000 deaths in the U.S. And yet Alzheimer’s – a very unpopular disease that is erroneously characterized as just an old person’s disease – racked up almost that many deaths in just one year.

Alzheimer’s isn’t just for geezers any more.

That’s the title of one of the chapters in my manuscript – a work of fiction that centers on the lives – patients and their family caregivers – affected by Alzheimer’s or other dementia. A couple of my characters are in their 80s but there are three characters ranging in age from early 40s to mid 60s whose disease journey began when they were no longer considered young – but definitely not considered old.

What will it take to push people out of denial and into activism?

In the New York Times article linked above, AIDS activist, Peter Staley, is quoted as saying, “The hidden blessing of H.I.V was that it hit a community, my community, a community of mostly gay men. We had a base of organizing that came out of Stonewall.” [1969 demonstrations by members of the gay community in response to a police raid at Stonewall Inn, in Greenwich Village.] And then he goes on to say, “Alzheimer’s hits old people. There is no real organized community beyond AARP.”

I’m not happy with Mr. Staley’s characterization of Alzheimer’s as an old person’s disease because it perpetuates a myth that is simply not entirely true. But I fully back his advice to all of us:

How does a large, affected community get the country to care? It means playing a strong inside game: These family members need to organize effectively; they need to find their allies in Congress; they need to show up with sick people in front of key members of health communities.

Right on.

Alzheimer’s struck my dad in his mid-80s and my sister-in-law in her early 60s – both now deceased.

Treatable Conditions that Mimic Dementia – AARP. I am so pleased that AARP published this article about false positives for Alzheimer’s disease. Because of the high incidence of Alzheimer’s disease and other dementia, we have all become very sensitive to any abnormal cognitive challenges in our lives. A few people have said to me, “I keep losing my keys. I forget where I place them. Do I have Alzheimer’s?” I’m not a medical professional but I have been trained by several in the profession. Teepa Snow, one of America’s leading educators on dementia, had this response to that type of question, and I paraphrase:

If you forget where you’ve put down your keys, you may not have dementia. If you forget what they are or what they’re used for, you could very well have dementia.

Several years ago I underwent extensive neurological testing due to troubling cognitive symptoms. Turns out, the cause was a medication I was taking. Once I went off the med, I was 100% fine.

The attached AARP article provides possible reasons for cognitive abnormalities that are not Alzheimer’s disease: medication, urinary tract infection (UTI), diabetes, thyroid, and depression to name a few. That being the case, even if you forget what the car keys are for, you still may not have Alzheimer’s or other dementia.

In my attached article, Medications: harbinger of cognitive decline? I address just one of the causes for a false positive Alzheimer’s diagnosis. Please read that article, to be sure, but also read the attached piece by AARP. You deserve to have peace of mind by finding out if your symptoms, or those of a loved one, are reversible. And by all means, be bold enough to demand that your treating physician rule out all other possible conditions before putting you through the grueling neurological testing that many physicians prescribe as first steps, rather than the last resort when determining the cause of a patient’s cognitive decline.

Life as a Caregiver and Dealing With Stress Caring for Aging Parents – AARP. The attached article, written by Dr. Nancy Snyderman, chief medical editor for NBC News, shows us that even doctor-caregivers are not immune from the stress brought on by caregiving. A year after Nancy and her siblings moved their parents to live near her, Dr. Snyderman became “one of almost 44 million U.S. adults caring for an older friend or family member.”

My dad and I, five years before I became his caregiver; seven years before he died from Alzheimer’s.

Statistics show that caregivers tend to patients who are loved ones, an average of 20 hours each week – many times on top of part-time or full-time employment. Before long, Dr. Snyderman came to the realization that she had forgotten to check in on how she was doing. She gained weight, she slept only a few hours a night, and she experienced burnout – not unlike what many of us have felt as caregivers – or former caregivers – for family members.

In my article, Caregiver: put on your oxygen mask first, I address the importance of caring for yourself first, and the patient second. “No way,” you say, “my mom/dad/spouse come first; they need me!” You’re absolutely correct – they do need you, but if you get sick or disabled, you can’t be there for them. That’s why you need to place the oxygen mask on yourself first, and then on the person for whom you are providing care.

Most of us learn the hard way. We get burned out and emotionally or physically incapacitated, and then we start taking care of numero uno. Do yourself – and your loved one – a favor. If you’ve been ignoring the signs of stress that are enveloping you, stop being such a hero and start taking care of yourself. You will benefit from such care, and so will your loved one.

When your children attained the age wherein having “The Talk” about sex and other scary things became unavoidable, you simply jumped in and winged it – wanting to explain as much to your kids as they needed to know but trying not to lend any encouragement towards participation in said scary things. Didn’t you feel better once you checked that “To Do” item off your child-rearing list? I know I did.

My father in mid-stage Alzheimer’s.

“The Other Talk” is that which you need to have with your adult-sized children, regardless of how uncomfortable you – or your children – are about topics such as: illness, death, and finances. Acccckkkkk!

My mother and my daughter, circa 1977.

Or perhaps it’s the other way around. The adult children are broaching these difficult topics with their parents in the hopes that said parents will do something about these unavoidable issues. Regardless of who is on the receiving end of these discussions, they should be considered mandatory in every family.

Consider this scenario: Dad is dying of cancer and in a coma. Your mother has already passed on, and you have no idea what your dad wants. His cancer is inoperable and he’s having more and more difficulty breathing and he hasn’t had any nourishment by mouth since he went into a coma. Does he want breathing assistance? Does he want intravenous liquids and nourishment? Does he want pain medication to help him through the extreme pain that cancer causes, even if the medication hastens his death?

What’s a son or daughter to do? Wing it?

Let’s look at another scenario: Mom is in the advanced stages of Alzheimer’s and is unconscious more than she is conscious. There is no reversal possible of the debilitating effect this disease has had on her body: her doctor tells the family that their mother’s ability to swallow is greatly compromised, her breathing is becoming more and more labored, and she has shown no interest whatsoever in food or liquids. Her body is in the active stages of dying.

In this scenario, dad is still living and cognitively competent and he has told the family and your mother’s doctor that he wants every single measure possible to be employed to keep his bride of sixty-five years alive. You, however, have a copy of your mother’s living will/advanced health care directive – as does your father – which contains conflicting wishes to those of your father. Your mother wants no extraordinary measures employed – not a respirator, not a gastric feeding tube, no intravenous nourishment, nothing except for medication that will make her as comfortable as possible as she leaves this world. When your mother was fully aware and cognitively healthy, she had her wishes incorporated into a legal document, determined to take the responsibility of making such decisions out of her loved ones’ hands.

What’s a son or daughter to do? Follow mom’s wishes.

What a gift that is – carrying out your loved one’s wishes when she is no longer able to verbalize them. It would still be a gift if mom’s wishes were clearly spelled out that she wanted everything done to keep her alive as long as possible. The point is not what was decided that is important – it’s that the decision had already been made – a decision that remained in the hands of the patient/family member.

Both of my parents gifted me and my two siblings with documented specific wishes for their life and death. My mother unexpectedly died in her sleep on September 24th, 1994 at the age of 77 – something she had wished and hoped for her entire life – who doesn’t? My father died on October 13th, 2007 at the age of 89 from complications of Alzheimer’s and cancer. There was no guessing when it came to the time when us three adult kids rushed to his bedside. He was comfortable in his death, and we honored him by following his wishes for no intervention. Did I want my dad to die? God no. I wanted him to live forever; but none of us gets to do that, so I’m glad that my father was allowed to take his last breath and leave this world his way.

Sally Abrahms’ article linked above does a fantastic job of addressing some common emotions felt by the family caregiving community – those who provide free caregiving services to their loved ones. Let’s look at the three emotions she mentions and also look at the struggles many caregivers experience at their place of employment.

Grief. We grieve the loss of the person who is still with us. “When someone dies, it is an overwhelming and horrible experience, but it is the end of something,” says Suzanne Mintz, cofounder of the National Family Caregivers Association. “But with a caregiver, the grief is perpetual; it goes on and on and on.” Until you’ve experienced the ambiguous loss of your loved one, you can not say that you understand that particular type of grief. This ambiguous loss may result from a loved one’s dementia, debilitating disease, or other conditions that rob the patient of their physical or cognitive abilities. Ms. Mintz states that when one person receives a diagnosis, you both receive the diagnosis. You both experience the gradual loss of the life you once had and you know it won’t be coming back. That is a grief that keeps on giving because as time goes on, more and more of ones previous abilities disappear right before your eyes.

Guilt. “I wish this would all be over so I can get my life back.” Oh my gosh, did I just say that? Many of you have felt that way and then struggled to rid yourself of the ensuing guilt. But guilt is constant – whether it manifests itself in believing that you are not doing enough for your loved one, not doing enough for your family, feeling negative towards the one receiving your care – it is constant. And it is normal. These negative feelings don’t make you a bad person. Rather, they are proof that you are a sensitive, aware and evolving being who hasn’t yet perfected the art of living.

(Photo credit: TNLNYC)

Exhaustion. Physical, emotional, and spiritual exhaustion sneak up on you and if not attended to early enough, they are killers. In my article, Caregiver: put on your oxygen mask first, I address the need to place yourself as more important than the person for whom you are providing care. “Gee, that’s pretty darn selfish!” Not at all. If you get what I’m talking about, you’ll agree that your loved one’s care is fully reliant on your ability to provide it. You can’t do so if you are on the brink of exhaustion, or worse, you die before your loved one, which is more common than you would like to think. You need a caregiving team. That team may consist of other family members and/or neighbors and acquaintances. You can’t do it all by yourself. If you’re a solo caregiver, check out the article, Solo Caregiving. This article provides tips on how to get the help that you need from those around you.

Discrimination. According to the recent report, Protecting Family Caregivers From Employment Discrimination, “roughly 42% of U.S. workers have provided unpaid elder care in the past five years” and that number is expected to rise to about 49% by the year 2017. With so many family caregivers out there, especially with the incidences of Alzheimer’s and other dementia on the rise, we all hope that employers will be more inclined to help their employees. But discrimination does occur in the workplace in the form of: limited schedule flexibility, denied leave or time off, and even dismissal from ones job.

The Family Medical Leave Act (FMLA) protects some caregivers but is an imperfect protection that is not required of employers with fewer than 50 employees. Additionally, of those employers required to adhere to FMLA guidelines, the employee must have been with their company for at least twelve months and have worked at least 1,250 hours during the previous year. With no FMLA protection, your job is at risk – especially in an economy when so many other workers would be glad to put in the hours that you’re not able to fulfill.

A word to employers. I know that it’s hard to maintain success while some employees just aren’t pulling their weight. But I think you’ll agree that some of you need to be more sensitive to the struggles experienced by your caregiver employees – employees who have never let you down prior to this difficult time in their lives. These exhausted souls can’t tread water fast enough – won’t you help them? Please do what you can to make reasonable accommodations that will lessen this temporary turn of events in your employees’ lives.

During this highly contentious and rude political season, it’s really difficult to discern fact from fiction. Oftentimes we get caught up in the rhetoric spoken by Talking Heads and dismiss what we’re hearing based on which Talking Head is doing the talking.

For the most part, I’ve trusted what the AARP has put out regarding issues and candidates over the years so I felt fairly confident in posting this article.

If you want clarification about the following myths, please take the time to read the above link.

Myth 1: The new law cuts Medicare drastically, so I won’t be able to get quality health care;

Myth 2: I’ve heard that Medicare Advantage plans will be cut or taken away;

Myth 3: I’ll have to wait longer to see my doctor – or I won’t be able to see my doctor at all;

Myth 4: If I have Medicare, I will need to get more or different insurance;

Myth 5: The new law “raids Medicare of $716 billion”;

Myth 6: The law is going to bankrupt America;

Myth 7: The new law will drive up premiums astronomically;

Myth 8: If I can’t afford to buy health insurance, I’ll be taxed – or worse;